[William Kim Burnett]

Hi Charlene,

I don’t like the gloomy weather either, but I try to offset the effects by going to the Gym at least twice a week. It not only helps me get the walking in I need but also gives me the interaction with other people. We sometimes get into social isolation if we don’t have a schedule or a plan which can be difficult on those bad days, and you know the ones I refer too. Anyway at least get out and move going shopping always helps me. Staying at home is not the answer for me although there are days when we just need Sunshine in our lives. 😎

God bless,

William Burnett

[William Kim Burnett]

Hi Maizeblue,

We had a cockatiel for 14 years not sure what caused my IPF. No indoor pets after that, sure loved that bird he has been gone for a long time. Just mentioned as a reverence. Best of luck God Bless.

[William Kim Burnett]

Hi Carol,

My name is William and I also have Raynolds and IPF. I am not on oxygen except when working in the yard or exertion. I also wear CPAP at night, I was on Ofev for about 2 years when my doctors suggested that I try Cell Cept also for the Immune system problem. I decided to come off the Ofev although my Lung surgeon did not think it was best. I did it for Quality over Quantity since my disease was holding steady, to be determined. I continue the Cell Cept and watch my diet and get a lot of walking in. I am blessed with an indoor track that is level, you know the challenges with slopes and hills. I have had to make a lot of life changes such as sports I used to do but still camp, travel with portable oxygen and exercise every day. I and my wife spend a lot of time together and make as much out of every day. I also use mullein extract in my coffee with about 6 drops along with a sprinkle of turmeric and honey no sugar. I would say for me that sugar, chocolate, and dairy would be my biggest issues in this battle. also, any alcohol is bad. I try to improve my spiritual well-being each day with quite time and have been blessed by the results. I am in my 5th year. Good luck with your journey and I hope something I wrote will be of help.

God Bless

William Burnett

[William Kim Burnett]

Same as Bill, Told I had IPF 3 years ago been on Ofev for 2.5 years started at 150 but couldn’t tolerate and was switched to 100. Sought out second opinion with the help of my Lung Doctor to a transplant hospital, ran more test and they told me they weren’t sure it was IPF but might be autoimmune disease. I also showed ground glass, but have not shown progression in the lung scarring.

Went off Ofev for the time being and have started on another drug called Cell Cept to fight autoimmune disease. It is frustrating but we can not give up hope.

[William Kim Burnett]

I was on OFEV for two years but have now switched to Cell Cept because of high liver enzymes and Auto-Immune disease. The Cell -Cept will be used if my condition gets to transplant status for P.F. anyway. I do have Gerd spells usually after meals. (Diet is critical) but unusually not after bedtime. My status is good right now and am exercising regularly. Outside activities are tough and I wear a mask if any kind of yardwork (not recommended). I just had a E-Probe done last week and will be seeing my Gastro next week. Thanks for the heads up, my mom and sister both had a Hiatus Hernia so I suspect the same with me, I have also heard the condition can be hidden (no Proof) I might add that stopping the Ofev is risky but until my lungs get worse, I am happy to do without it in order to protect my liver as much as possible and to avoid side effects. I recommend that you get all labs done as the doctor’s order. May God bless you and heal you.

William Kim Burnett

[William Kim Burnett]

First let me say everyone has different situations going on. I did ask my doctor about cutting down doses and he told me there weren’t enough studies to show that as an alternative. Needless to say, the Ofev or something else shot my liver enzymes up and they put me on Cell Cept instead. I will also note that the Covid Booster triggered Myopathy in my body and just about crippled me last November so the inflammation could have come from that. I am much better now but no longer take Ofev my body couldn’t tolerate it and the side effects. My enzymes have constantly been dropping and I am walking and stretching out daily and my breathing test are staying steady. Exercise is paramount. I went yesterday and took the Evusheld vaccine because of the reaction to my immune system to the booster. I think Qfev is a great drug I took it for 2 years 100mgs twice a day and it held me steady. I had to adapt to the Cell Cept which is used in all transplant patients in order to alleviate my immune system attacking itself. I still have lung disease, but the scaring is from something else other than P.F.  I will return to Ofev if and when my condition worsens. I give all praise and glory to God in this journey. And pray his blessings on all of you. I would seriously consider alternatives only with my doctors’ approval.